Things you would have done before surgery, if you would have known more about it.

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Things you would have done before surgery, if you would have known more about it.

I am so glad I have found this forum. I have learned so much just from reading what is here already. My surgery is a week from today, and I am frightened...I really wasn't told anything about restrictions or preparations. I didn't even know I had scoliosis until two years ago when I went to a chiropractor and said "I think I have scoliosis." That is when I got my first scoli X-rays ever. My curves were 17 left thoracic and 33 degrees lumbar, with a twist at L2 and L3. I did pt and exercise and it got ok but then I started with fecal incontinence...just a bit, but it progressed to a lot. Tests showed nerve insufficiency, got an MRI that showed nerve compression in all lumbar vertebra. I had to travel to Duke, three hours away, to find a surgeon. Dr. Bagley will be fusing t6 through my pelvis. A lot, but my symptoms of nerve problems are progressing rapidly. I can feel my back changing every day, I have numbness and weakness in both legs when walking and stinging twinges when lying down.

I have not had a lot of time to prepare or get my head around the enormity of what is to happen, my first visit with my surgeon was two weeks ago. So my question is what do I need to do to prepare me and my house for this? Is there something you would have done better or different if you had known before surgery what you know now. I am 62. I have kept up my exercise and do two miles a day. Will recovery and surgery be the nightmare I am thinking it will be?

I am so glad I have found this forum. I have learned so much just from reading what is here already. My surgery is a week from today, and I am frightened...I really wasn't told anything about restrictions or preparations. I didn't even know I had scoliosis until two years ago when I went to a chiropractor and said "I think I have scoliosis." That is when I got my first scoli X-rays ever. My curves were 17 left thoracic and 33 degrees lumbar, with a twist at L2 and L3. I did pt and exercise and it got ok but then I started with fecal incontinence...just a bit, but it progressed to a lot. Tests showed nerve insufficiency, got an MRI that showed nerve compression in all lumbar vertebra. I had to travel to Duke, three hours away, to find a surgeon. Dr. Bagley will be fusing t6 through my pelvis. A lot, but my symptoms of nerve problems are progressing rapidly. I can feel my back changing every day, I have numbness and weakness in both legs when walking and stinging twinges when lying down.

I have not had a lot of time to prepare or get my head around the enormity of what is to happen, my first visit with my surgeon was two weeks ago. So my question is what do I need to do to prepare me and my house for this? Is there something you would have done better or different if you had known before surgery what you know now. I am 62. I have kept up my exercise and do two miles a day. Will recovery and surgery be the nightmare I am thinking it will be?

Thanks so much!

Hi and welcome! You've had a huge shock and must still be absorbing what's happened so in that respect, you're a bit different to most of the folks on this forum, who often have years to come to terms with the need for surgery. I feel for you.

Your ability to do 2 miles per day walking will stand you in good stead. I believe being fit is the best thing you can do for yourself before fusion surgery, and many people can't because of their pain. So you have a good chance of having a great result and smooth recovery. At this late stage, organizing someone to help you when you come home, is important if you can.

I'm sure others will have suggestions of things you an do in the short time before surgery. Personally, all I could think about is getting myself TO that date, and fully expected everything else to fall into place. It did!

I hope you'll let us know how it all turns out. Good luck!

Surgery March 3, 2009 at almost 58, now 63.
Dr. Askin, Brisbane, Australia
T4-Pelvis, Posterior only
Osteotomies and Laminectomies
Was 68 degrees, now 22 and pain free

Thank you, thank you. I have a great husband whose support is amazing. I am finishing up work projects and cleaning in preparation. I clean til I am tired, only takes twenty minutes for that to happen, rest, get up and go again. I have lots of pain, but I go anyway. What has shocked me about the whole thing is how exhausted I am all the time now. They tried epidural shots before sending me to Duke, but they made my symptoms way worse. I think inflammation was holding my back together and when it was gone the bones began to collapse quickly. Maybe not knowing too much about it is a good thing...I don't have time to panic. I have read through these forums and ordered grabbers and toilet lifts and elevated seat cushions. This is a great forum for which I am grateful.

Welcome to the forum. Like Jennifer said, you had a very short time to absorb the news and it could be a good thing because you have less time to panic. For me, the worst time was making this decision (I had scoliosis since age 7 and had a surgery at 45). I think that emotionally recovery was much easier than making the decision to have the surgery.

As far organizing your house goes - put pots and pans on the counter top because you won't be allowed to bend. Same for clothes - move all your clothes to upper drawers. We switched drawers with my husband - I took all the upper drawers and he has the lower ones. Remove rugs or anything you can flip over to. You might be using a walker initially - make sure that furniture is arranged in such a way that you have enough room to walk with a walker. I didn't think about that before the surgery and when I came home, we had to move some furniture pieces from a bedroom to a living room and even had to take off a door from one bathroom because a walker would not go through it. We hanged a sheet instead of a door. Weird, but had to do that.

Buy a few bras with front closure. If you have sports bras, that would work to. You don't want any hooks to irritate your scar. You probably would not care about any bras during the first month, but then front closure bras would be nice. Buy a sponge on a long handle - you would need it to wash your legs because you want be able to bend. I have a bench in a shower and it is very helpful. First showers would be nice, but exhausting and you would be glad to sit down on a bench and rest. I put all my make up and contact lenses supplies on a tall dresser. Before the surgery, I would use a bathroom mirror to put on make up and I had to lean forward to do it. Not a good thing after the surgery. So I got a mirror on a stand and put it on the dresser. I use it now to put on make and contacts.

Good luck with your surgery!

I am stronger than scoliosis, and won't let it rule my life!
45 years old - diagnosed at age 7
A/P surgery on March 5/7, 2013 - UCSF

Welcome! Irina has some great suggestions. Call your doctor's office and ask if there is a nurse or PA that can talk to you and explain more what is to be expected. I had fecal incontinence from a tear that I had during childbirth and I know that the incontinence is not much fun with all of the hygiene and cleanup involved. I hope that your surgery is successful in that area.

Buy "reachers" for every level of your house as you cannot bend after surgery to pick up anything!

Wishing you the best! There are lots of great suggestions in many threads here as well as great info that Linda has compiled.

Things to buy before surgery

I agree completely with Irina. The only things that I would add is a shower chair. I was 63 (still am). I bought some men's t-shirts to wear under my brace. You need to wear very little under the brace and anything with seams is uncomfortable. My surgery was in the winter, so I wore sweatpants with a tie waist so that I could maneuver them over the brace. Another good thing is bakini underwear, with a brace. I also had fleece zip up jackets to wear over the brace, but that was winter time.

Good luck. You can walk further than I could before surgery. My pain would start after a half mile or so. Definitely have more than one grabber, especially once you are able to be home alone. This way if you drop your grabber, you have another one to pick up the one you dropped.

Thanks everyone. Surgery was two weeks ago Friday, and I am on the mend. Got the dressings removed from my long long incision today and had a shower! Once again, thanks so much for this forum! Fear fades when it is replaced by knowledge. This hasn't been fun, but it hasn't been the nightmare I was afraid it would be. I am still in the hospital with a discharge plan of Friday. All the pain in my lower legs is gone! Yeah! Already worth it!

It sounds like you are doing great. The recovery is slow and takes patience, but you will gradually notice improvements. It gets better and better-even after 2 years! I hope you have a smooth recovery.

Thanks for letting us know! Very glad to hear things have gone well for you. Just wanted to wish you well for your recovery. Keep in touch and if there are any questions about recovery, just ask - there's a wealth of experience and knowledge here. Take care.

Surgery March 3, 2009 at almost 58, now 63.
Dr. Askin, Brisbane, Australia
T4-Pelvis, Posterior only
Osteotomies and Laminectomies
Was 68 degrees, now 22 and pain free

Awesome! Relax, take your meds, eat good foods, take your calcium, walk daily, and do EXACTLY what your doctor tells you to do for movements. Don't be surprised when your body does not move exactly like you want it to be. The pain that I had is gone with the surgery, but my R leg is a little bit weak. I also have some left buttocks pain on my L side which has improved with a heel lift.

Us "seasoned ladies" do not heal like the younger folks, so have patience......I need to tell myself that every day! I go to physical therapy and that is helping. I am generally pleased with my surgery and with time, I am sure that I will be just pleased.
Susan